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“Life is a miracle!”

(A gynaecologist, mother, disability rights activist, life-skills coach and environmentalist, Dr. Neelam Sodhi, Founder of Ashirwad Trust, Ludhiana knows a thing or two about perseverance, dynamism, and faith. Excerpts from an interview with the winner of Manava Seva Dharma Samvardhani Award for the year 2011)

Introduction

“I am basically a gynaecologist who until six months ago was working at Guru Teg Bahadur Sahib Charitable Hospital. I hail from Ahmedabad, but after marriage settled in Ludhiana, pursued my higher studies, and subsequently started my career. I have been fortunate enough to be gifted with a lot of work always. In my field, services cannot be timed. Babies never tell you when they come. So, when duty beckons I have to be there.”

“When I had conceived my first child, I was in the midst of hectic activity. Before I realised it, problems arose in my pregnancy and my son Jaswinder was born pre-term. Soon, I had a hint that something was wrong with him. When he was eleven months old, I took him to my parent’s home where we had him diagnosed. It was then I learnt that he had cerebral palsy.”

Early years of motherhood

“About two decades ago, there was literally no physiotherapist, or credible forms of treatment available for cerebral palsy. I learnt physiotherapy and occupational therapy, and shuttled between Ahmedabad and Ludhiana to meet with various people who taught me how to practice remedial teaching methods. I learnt that unless you stimulate the child’s mind continuously, the inherent potential of the child cannot be tapped. So I constantly played with my son, talked to him, and looked out for plausible responses to the stimuli.”

“Raising my son during his early childhood was the most stressful, yet a life-changing experience for me. I was juggling a career with at least 40–50 patients a, taking care of my family, raising my son and personally administering him therapy, and taking lessons about different teaching techniques. That phase had its share of joys as well as surmounting pressure.”

Birth of an idea

“When my son was about 7 years old, his teachers called me often to discuss his inability to register and reproduce the regular lessons that was taught to him. They complained about his inability to read or write a single word even after repeated teaching. Each time, I pleaded to them to give him another chance at learning. But, they were insensitive. I felt perturbed and wondered why they only saw the problem and not realise that Jaswinder is an intelligent kid. This anger created a lot of energy within me. I lunged at books to learn more about teaching techniques such as mental mathematics, and other such Montessori methods. Gradually, though without holding a definitive degree, I was becoming a physiotherapist, occupational therapist, a special educator, a trainer, all at once. However, all the work that I was handling was growing on me, making me very tired. I wanted something simpler in life.”

“While trying to distract myself from all the stress, I took to teaching adolescent education and environment-consciousness in schools. One day, when I was feeling the lowest, with utter self-doubt and lack of confidence, I was requested to address 150 girls on adolescent education programme. It surprised me how despite feeling so low, I could sound so sure of myself and comfortably talk to the crowd that day. Sharing my experiences helped me to connect with them as a woman, breaking the wall between the audience and me. I felt an immense sense of satisfaction and this occasion was a big turning point. I decided to have another child. Also around that time, many people were urging me to start an organization and work on the issue of Cerebral Palsy.”

“The idea of conceiving another child was ridden with a lot of anxious questions. ‘What if the next baby also has a disability?’ This was one of my biggest fears that my family shared as well. After giving it much thought, I decided to leave everything to God. This newfound spirituality gave me strength to continue with a new vigour. And then, merely two months before my daughter was born, I launched my organisation Ashirwad.”

“My daughter Arzeen was born eleven years ago, a healthy, full term baby, and she practically brought back life into our family’s existence. She amazed me in the way she grew, crossing one mile stone after another without a struggle. Life is a miracle, and we often don’t appreciate that!”

About Ashirwad

“Ashirwad was set , by three parents of children with cerebral palsy. Our major focus areas are: early identification and early intervention. We have been engaging with the government, NGOs, and the general public, utilizing every possible forum to discuss openly and plainly about disability. I have been actively working on the Sarva Shiksha Abhiyan, which has been doing some really marvelous work at the grass-root level in Punjab. Nine organizations have especially come closer through our Annual Disability Day conferences, and our strength lies in our absolute cooperation and coordination sans a sense of individualism.”

Expanding vistas for dialogue and understanding

“It has been a painstaking journey to raise a lobby for disabilities, what with the State of Punjab having so little awareness and sensitivity towards people with disabilities. When we started, there were around four to five NGOs working in similar areas, but they were obscure. Today, there is a steady increase and having developed a strong network in the last decade the state boasts of around 30–40 organizations working on different disabilities.

“Visibility is an important factor in determining the success of your efforts. We have always tried to put in a word about our children, or have them meet other people, in different fora. We put up cultural performances as an exclusive contingent in the state level Republic Day Parade in 2010. People were moved by the effort put in by these children, and several people have been asking us to conduct such performances again. The larger success lies in the fact that the very public which shied away from these children is now opening their arms to them. Acceptance levels have gone up and talking about disabilities is no longer such a tedious issue. I am optimistic that if organizations shed all their inhibitions and take on a more positive and rights-based approach, things will change for the better.

Meet the family

“My son Jaswinder is the first child in Punjab, and probably in the whole country, who is attending Engineering college, managing his work independently and perfectly. For me, as a mother, I feel very fortunate to be my son’s parent, because he made me appreciate anybody who has faced exclusion, be it disability, colour, race, class, or anything else.”

“My husband, Dr. R.S. Sodhi is my pillar of support. Through all these years, he has shared my pains and struggles, and more importantly has left me to expand at my own space and pace. Being an orthopedic surgeon, when my son needed a crucial surgery, he took on the task and performed the operation himself. Today if I am here, it is because of him. This story is not a single story. It is as much about me, as it is about a man who stood by his wife, it is about a family that stayed together, it is about a boy who faced all the pain of a medical condition called cerebral palsy added to which was the pain inflicted upon him by the society and how he has overcome them. Every day is a challenge, but there is so much to life that we must appreciate and be grateful for.”

“Being bestowed with MSDS award has boosted my morale by leaps and bounds. It has come at a critical time in our census related work. I can tell you that we have made a little more progress than we would have, thanks to the cheer of winning this award.”